Thursday, April 16, 2015

Will's Sunflowers and a visit to school

We have been home now nearly a week; tomorrow marks one week since we ran out of the hospital. Around mid week Will started asking to play on the Wii and the iPad. He hasn't asked to play on either of these items for like two weeks. He's also asking for dessert. All these are good signs for us that he's feeling better.

He still isn't back to baseline, not sure how long it's going to take, but he's hanging in there.

Every day we've tried to get out of the house and do something... Target, dry cleaner etc. I think that's for both our sanity.

We've had two school friends come by which has been fun, but you can tell he's totally wiped out. He's found his favorite spot on the couch and spends a lot of time observing what's happening. He's definitely lucid and can tell you what day it is and what's happening the rest of the week, but during conversations he seems more spaced out.

His home speech therapist came over for a session and gave me a good example of what I'm talking about. She showed him a picture of a girl playing Frisbee on the beach and she asked Will "what is the girl doing" he said, she's playing in a sandbox. So he's in the right category, but not necessarily the right word. He doesn't do this all the time, but it's a good way to explain some of the disconnectedness we see. Also, his thought process is in tact, but it's difficult for him to describe his thoughts in full sentences.

The speech is much improved, but just trying to illustrate what's going on.

From a PT / gross motor standpoint he's tiring easily but we keep working on maintaining his strength so that when he's back in action he still has the actual physical ability to move around.

Minus needing a haircut, he's doing pretty amazing.

Today Will visited his friends at The Parish School and brought special snack, sat on circle for reading time and then visited all the front office staff. Someone called him the Mayor of The Parish School.
Special snack.

Reading on circle with friends

Saying goodbye; we'll be back for a visit next week.

I couldn't quite get the angle right with the stroller and pot, but this is a special sunflower pot that the nature learning teacher painted and potted for Will. It say's "Will's Sunflowers" on it. It's right out side his building and near the bed of wildflowers he and his class planted the week before he got sick. He was QUITE pleased to see his name and this special flower. I also thought the sunflower was such a great pick - he is my ray of sunshine every day. Even when he is wining for me to get off my computer and play the Wii. 

Thank you again to all the special friends, surprises, food drops, wine and dessert drops (!) and the outpouring of support for Will. He's probably going to surprise us all and beat this thing super quick. 

Don't forget to RSVP for the 3rd Annual Party with PALS on Thursday, May 14 from 7 - 10 p.m. at Saint Arnolds Brewery. Click here to RSVP:

Tuesday, April 14, 2015

Party with PALS

Friends, I hope you'll be able to join us this year for the 3rd Annual Party with PALS.

People Against Leigh Syndrome (PALS) was started to support efforts which would lead to viable treatments and ultimately a cure.

If you can't attend, you can still donate. 

We have a VERY exciting announcement at the event, something that will help push Leigh syndrome to the absolute forefront of mitochondrial disease research. I hope you'll join us. 

Tickets are $55 and you'll get to enjoy an endless supply of Saint Arnold brews, Goode Co. BBQ and learning more about Leigh syndrome. 

Go here to RSVP or donate (or both!)

We will have quite a few silent auction items and a raffle. Special thanks to Lisa Sullivan for spearheading this effort. 

Thank you for all that you do to support our family, Will and most importantly, Leigh syndrome research. 

Special thanks to Jimmy Egeland for designing the invite. 

Monday, April 13, 2015


We made it home Saturday afternoon. Showers, baths, real food, real beds... all the little things in life that make things so nice.

Will is about 90 percent back on his speech. It's still somewhat labored and slurred, but we're working on it.

Will is about 60 - 75 percent on gross motor skills. His gait is uncoordinated and slow and he seems to be having the most problems when he's stopping and starting. He can walk short distances on his own, but it's very difficult to trust that he will be okay on it. We'll be doing PT three times this week and will continue that for as long as needed.

Will is about 90 percent on "being connected" - one of the symptoms is this kind of far off look, disconnected with what's happening and what I would call disoriented conversations. He still seems a little spaced out but significant improvement.

The stamina and energy levels are still in question... he's been lounging for 90 percent of every day. We're going to try and make an outing every day - even if it's just to Target. Next week is his birthday. We're going to go to celebrate at school with his friends and still planning to do his birthday party.

Hopefully he might be able to go back for some half day's at school in late April or early May. We have an appointment on Friday with Dr. Koenig to check in and make sure we're not going backwards.

At this point, it's just day by day.

Thank you all for the amazing outpouring of love and support.

Will's teacher and the entire school have been amazing. They came bearing all sorts of surprises which made our 6 day stay bright and happy. Hopefully we can deliver some thank you's this week. 

I really want to thank my husband. I read an amazing article about "What you don't realize about the dad behind the diagnosis" -

This article captures our lives down to the exact words. This past week was insanity and there's no way anyone could have done it without an amazing partner.

Will is our superhero and it takes two people to make this superhero happy.

Maybe it takes three people - the smallest one makes him happiest when she's not being crazy :-)

Wednesday, April 8, 2015


Last night we had some visitors and Will seemed to enjoy visiting. His teacher brought cards and artwork which really was so sweet! 

Our friends brought us all dinner, including Neil at home!

As we headed to bed the nurse came to do night check vitals and decided his IV arm was looking puffy and hard. The IV had to come out and be replaced on the other arm. I am hoping this one works because it's very traumatic for him.

Had a good night sleep for the most part.

He didn't eat a great breakfast but it seemed about the same amount of food he's been tolerating at each meal. 

Got a call from Neil that sweet Quinn woke up with a fever. I guess she was feeling left out. 

Got her an appointment at the pedi just in case. 

Meanwhile, I made Will get up and walk around a bit then go for a stroller ride. He did marginally better than yesterday which is all I can ask for.

Neil's parents came for a visit today and thankfully we were able to make it all work for not having any of our kids be left alone!

The pedi team decided to move Wills care level down, meaning he won't have to be monitored as closely and he's gone from IMU to general. This means he will have to move rooms.

So he will be packing up and moving to the 10th floor. I'm not pleased with this because I don't think it's right to up and move a child who is scared and overwhelmed to a totally new room. But some other kid on the ER needs Wills bed. So alas we are just one small cog in the healthcare machine of churn. Everyone really tried to not move him but they have a full house. 

Meanwhile I've been home with Quinn today. Apparently she's got a stomach virus... she puked this morning before the pedi then again as she woke up from nap. This was right after I showered of course 😄

Hoping it's some quick and not easily spread 24 hour bug.

Will seems to be in better spirits. He's ready to play some air hockey tomorrow! 

Thank you again for all your love and support. Our friend Tahra has started a food drop calendar. Please email her at if you would like to . 

Will update more as we know.

Tuesday, April 7, 2015

Tuesday in patient

I am going to post on this entry throughout the whole day....

Neil said his night was decent, awake from about 3-6 am.

He ate a decent breakfast.

I arrived this morning to a huge smile and a much more alert little guy.

My mom is here visiting today.

We are off isolation.

He went for a short walk in his leg braces. He needed a lot of support and didn't not like having to walk. Got to keep those legs moving!

After the walk we got in his stroller and walked to see a fish tank. He seems totally wiped out now.

Still very ataxic, slurring words and having a hard time focusing, but I am seeing my little wiggles come back to us!

We got Wills second dose of 'roids this afternoon.

His symptoms haven't improved but his attitude and "Will" sly, spunky guy attitude is slowly coming back.

He decided he didn't like his ID band and took it off. He and my mom decided his new name is Joe. He thought that was hilarious and carried his joke through with some visiting medical students.

He finally gave it up and took a nap late afernoon.

We made a calendar for each day we are here with a checklist of things we should do every day.

We saw an air hockey table and put it on the calendar for Thursday.

Going for a walk is on every day... He just gets wiped going to the bathroom.

Monday, April 6, 2015

Our hospital visit just got a little longer

Quick recap:
Will went to the ER on Saturday afternoon and were admitted. Did the "fast/awake MRI" which resulted in a few usable scans and also in a diagnosis of yet another extremely rare brain disease, a viral illness in the cerebellum. It causes ataxia, slurred speech, weird eye and head movement, lethargy among many other issues.

On Sunday, we pretty much hung around.

On Monday, he had a spinal tap (lumbar puncture) and MRI under general anesthesia. Will's mito neurologist, Dr. Koenig, ordered the spinal tap to make sure there was nothing else going on that we couldn't see. She added in the MRI for good measure since the first one wasn't great.

Monday, late afternoon, Dr. Koenig and the neuro team came by. The MRI and initial spinal tap findings further confirmed the original diagnosis. Additionally, it 100 percent confirmed there are NO ADDITIONAL LESIONS!!!!!!

I would like to repeat that part. Will's brain shows no additional lesions and in fact, the entire area (except the cerebellum) looks good, or at least good for someone who has Leigh syndrome. This brought us to nearly uncontrollable tears of joy.

Dr. Koenig said, you guys have really hit the lottery on rare diseases. This cerebellitis isn't something specific to Leigh syndrome or mitochondrial disease. She said it's not unheard of, but very rare.

The only sort of solution  is to administer a steroid to help reduce the massive inflammation of the cerebellum. The pros are it should help reduce inflammation which should help reduce the symptoms Will is presenting. The cons are it might make him aggressive, hallucinate, increased appetite.

Frankly, if he gets aggressive and starts eating I would be happy. His original symptoms have not gone away and there is hardly any improvement. Today's anesthesia didn't help with the lethargy or slurred speech. Since his 10 bites of mac and cheese on Sunday night's dinner, he only has eaten some applesauce.

Here's the kicker... the steroid is administered for five days via IV. We will not be leaving the fabulous accommodations at Children's Memorial Herrman until Friday (assuming all goes well). He received his first dose tonight.

So, Neil and I will be trading off night duty and hopefully we'll see some improvements in symptoms.

We really have no idea what to expect. We've been told that this will take weeks for Will to recover from, possibly months. We are working to get speech and PT services at home increased so we can work hard to get back to baseline.

Right now, we are focusing on getting Will to a better place and keeping Quinn happy.

At this point, all we can do is be patient, pray and love on Will and Quinn.

So many people have offered to bring food, babysit etc. THANK YOU. Neil came home last night to a few bags full of prepared foods, some special Easter treats, some wine and flowers. THANK YOU.

At this point, I think we're set for the rest of the week. I can promise you I will be calling favors in and asking for help as well as dinner drops. Just did that tonight - I made a Target run after Quinn went to bed and a friend watched her. I ask for patience on responding to these offers, not because we don't want or need them, but because we really have no idea what tomorrow will hold. We need to get a grip on that.

We are being pretty cautious with visitors at this point. Will is currently on isolation which means any nurse/doctor who comes in has to wear a face mask and blue gowns. It's pretty intimidating. If you would like to visit, send something special or support Will please let me know and we'll work on making arrangements. Please understand if we decline a visit. I think he's totally overwhelmed right now and we don't want to add to it.

He does love watching video messages, so feel free to text those over. He's watched a couple quite a few times. He got a very special message from his school friends. I should add that the entire school has been incredibly supportive, reaching out with truly amazing kindness.

I promise you, he's going to be home soon and bored stiff since he won't be able to go back to school, likely for weeks. We'd love to plan some low key stuff with friends in the coming weeks. I will share when we're ready for that!

Many of you know our little guy to be an easy going, make you laugh and laugh out loud kind of guy. That's not what we are seeing at all right now. He often times stares off into space, can't form his thoughts/words and is sensitive. He's struggling to walk without a lot of support. Things that usually make him happy aren't really working, except perhaps, cracking confetti eggs on his dad and Papa. This is what I'm praying will change first.

I want Will back.

I will post updates as I can during the week. Thank you again for the outpouring of love and support for Will and our entire family.

Still in the hospital - update

It really never gets easier watching your child be put to sleep...
At any rate, he did great.

Will finished around 1:15 pm with the spinal tap and MRI.
He is still sleeping off the antheshia. Everything went really well and he has great color.

We will be here another night for sure.

Minus an IV blood clot issue and having to swap hands for his IV it's been pretty smooth sailing... All things considered.
He was NOT happy... Sweating from trying to fight off four women - story of his life I'm sure, fighting off all the ladies.

Dr Koenig wanted to do the spinal tap to make sure nothing else is going on as well as see if they can figure out what virus got in his brain and maybe there is some medicine to help. Otherwise we just wait and rest. It's like his brain has a cold and there is no cure for the common cold.

Since the "fast /awake" MRI wasn't the best, but did provide some good slides, dr Koenig wanted a good MRI since he had to be under anyways. I am very hopeful that the new MRI will only confirm this diagnosis and not offer any new unpleasantries.

He is trying so hard to be happy but is really ready to go home. We are in isolation right now so no stroller rides or hall walking.

Thank you for the prayers and amazingly kind gestures of kindness, support, food! and surprises for Will.

Will post more once we know more. Keep praying.
Thank you all!

Sunday, April 5, 2015

In the hospital

Will was admitted to the hospital on Saturday afternoon.

On Monday Will had a terrible day at school and there was marginal improvement until Wednesday. On Thursday he had an EEG done and started on oxygen at night. On Friday, he was even worse. We thought surely he would wake up on Saturday refreshed and ready to go, not so much.

He was showing extreme ataxia - to the point where he couldn't barely walk from the couch to the bathroom without support... running into walls, falling, missing the couch, falling off the couch etc. He also was slurring his words, almost to the point where you couldn't tell what he was saying. His eyes and head were rolling around. He couldn't make eye contact and hold it for very long. He was disoriented at times and not making sense when he was talking. He had no appetite and so on....

All this is still the case, except his appetite is better and he isn't as disoriented.

Neil and I spent the latter part of the week, especially the past 24 hours, assuming that the lesions on his brain had progressed and that this was his new baseline. I was assuming this was the beginning of the end.

The neuro ER team consulted with Will's neurologist and they decided to try a "fast MRI" which means 5 - 10 minutes while Will is awake. ha. We've never done an MRI without general anesthesia. They sedated Will, and not even 10 seconds after the med went into his IV line, his eyes really started rolling back in his head. He immediately calmed.

They told me I could be in the MRI room with him. I can't even begin to describe how horrific the next 5 minutes were. If you've never had an MRI the noise is the level of a jackhammer but it sounds like someone is throwing knives and hammers at you with the occasionally whirling and bird chirping noises.

So they get Will's head all positioned and the tech says, "I'm going to try it with minimal padding." - I should have said, no, MAX it out dude. So we get started, Will is freaking out. I can barely hear him screaming, but I can see him screaming at the top of his lungs.

The tech comes back in . We have to start over, add more padding to keep his head from moving too much. The guy packs him in there and then adds a pillow and huge body strap to keep his arms from moving around.

Back in he goes, screaming and kicking his legs. I literally yell for five minutes that he's doing great and to lay still and how proud I am of him. I was at least able to rub his legs. At one point in time I started gently slapping his leg trying to get him to focus on something else. It worked for a minute then the meds kicked in every once in a while.

After it was over, everyone told me that none of the slides would be usable because he was moving too much. So that meant he would have to have a general anesthesia MRI. Regardless, we were not going to be allowed to go home.

We made it up to the PICU and got settled. It was dinner time and Will was thankfully saying he was hungry. We ate and dealt with the constant stream of people in and out and finally lights out around 8 p.m.

Neil and I pretty much have been in utter panic. He's been home with Quinn as well which is even worse when you are not there.

The neuro team rounded this morning a few times, but then came in to deliver the news. We found out that the 5 minutes of MRI hell actually resulted in usable slides. Enough to diagnose Will with cerebellitis. Essentially it's a viarl infection of the cerrebullum in his brain. It's rare of course.

There is not treatment for it, but he is expected to make a full (long) recovery. It could take weeks till his body is back to baseline.

Neil and I both started crying in joy that this wasn't the disease progression. In fact, the crappy MRI doesn't show any new lesions!!! That is incredibly amazing news for us.

I'm sure the neurologists thought we were nuts to be so excited for a viral brain infection, but this appears to be fixable!

Dr. Koenig ordered a lumbar puncture for tomorrow to make sure that there is nothing else going on. They also are testing him for a variety of random illnesses.

So it's looking like one, possibly two more nights in the hospital.

Neil and I swapped places and kids. Quinn and I will be going back up to the hospital for an Easter Egg hunt in Will's room. He might be totally out of it, but he is determined to get a visit from the Easter bunny.

Please pray that tomorrow goes well. Will is going to be put under and that is always a very very scary thing for us.

Please pray that this really is fixable and that his recovery is quick.

But most of all please pray that he gets back to baseline and that after the cerebellitis clears that he goes back to being our little Will.